About Me
I suffer from Ehlers-Danlos Syndrome - Classical Type (EDS). I have constant chronic pain, migraines, prolapsed organs, subluxations and dislocations, and I have secondary conditions which further complicate matters, including: Postural Orthostatic Tachycardia Syndrome (POTS), a basilar invagination, tethered cord syndrome (which has been untethered), and subluxed vertebrae (which have been fused).
I am an amateur photographer, so I try to spend some time taking pictures. I also love bird watching and reading, so I do a good bit of both. I am also able to stay active by raising awareness for Ehlers-Danlos Syndrome. These activities help to keep me from getting too caught up in myself and my medical problems.
Photos
My Awards
Loading recent content...
My recent comments
-
- To: EDS_Ellen
I was diagnosed with Tethered Cord Syndrome by a neurosurgeon (I was ...
-
-
To :EgoHess
On: Ehlers Danlos Syndrome (Post) You can find a list of doctors who have treated EDS patients at:
Profile Comments
Add Your Comment!
Log in to leave a comment or Create an account
I was diagnosed with Tethered Cord Syndrome by a neurosurgeon (I was referred to him by my geneticist, Dr. Clair Francomano in Maryland at GBMC). He is one of the few surgeons in the country who does these surgeries on EDS patients, Dr. Henderson in Bethesda, M.D.
POTS and Chiari Malformation are also common EDS problems... POTS is diagnosed by a cardiologist using a tilt table test, and Chiari Malformation is another one you would see a neurosurgeon for.
There are secondary-diseases that EDSers commonly get, but those are the main ones.
Hey! I have EDS too. I'm concerned that because of my EDS I may have or will develop other problems. How were you diagnosed with tethered cord syndrome and where is the best place to get information on it. Thanks so much.
» Comments RSS